New here!
Hello, all. I am joining this community because you seem like such caring people. I joined an RA forum recently and discussed my frustration at not having a diagnosis. One member actually asked if I was “desperate for a diagnosis” in order to get disability! It was not a very welcoming group. 😩
I’ve been struggling for five years with fatigue, joint pain, rashes, occasional fevers. I was referred to a rheumatologist by my ortho after five foot and ankle surgeries where my inflammation kept “melting” tendons. The only thing positive in my blood work was a significant ANA. I have a great rheumatologist that began treating me immediately based on clinical findings.
FINALLY, a few weeks ago, after my rheumatologist analyzed joint fluid in my knee, I received an “inflammatory arthritis” diagnosis. He feels Lupus isn’t likely but RA or PsA is. I do not have psoriasis but my father did and my sister and daughter do. So I really don’t know at this point which it is, but was so relieved to be validated with a diagnosis that I broke down and cried.
I’m currently on Plaquenil, Limbrel 500, and Arava.
Just wanted to say hello and I’m looking forward to the information and support to be found in this group! If I can be of any help or encouragement to anyone struggling with a diagnosis, or in any other way, I would love to help if and when I can.
Hi Emmie! So great to have you here.
Gosh what a lot to go through! I am so glad that you have a diagnosis now and that it has brought some relief with it. I can remember when I was diagnosed with another condition, I also just cried - after such a long time of suffering and not having any answers, it really helps to have a name for what you're going through.
I'm curious about your tendon issues as I also have these - did you feel that the surgery made any difference? And how are your treatments working for you so far?
So glad that you found us. Looking forward to chatting more 😀
Thank you for the welcome! It started with ankle and arch pain. I had a torn posterior tibial tendon which caused my arch to collapse. I had foot reconstruction where they cut my heel bone off, moved it over and screwed it back on. Did a tendon transfer. It was a pretty brutal surgery with a year long recovery. They noticed during recovery and PT that I had an inordinate amount of inflammation. MRI revealed another (different) torn tendon. By the time the surgeon got in there it became two torn tendons. These were repaired only to (in my surgeons words) “melt from inflammation” within six months which then required subsequent repairs. After those failed he did a grafting of two tendons together. He refuses to repair again and will go to foot fusion if I need a subsequent surgery. I have an excellent foot and ankle surgeon or I would not be walking today! He recognized something else was going on and ordered blood work. It was normal but after the subsequent surgeries where he noted excessive synovitis he ordered them again. That time I had slightly elevated SED and CRP
He referred me to a rheumatologist who began treatment right away although my blood work was then in the normal range.
After beginning treatment with Plaquenil he quickly added Mtx. He wasn’t happy with my joint inflammation so switched to Otrexup injections. I did fairly well with those but he felt I still had too much inflammation so increased it. Within three days of increase I broke out in a rash. They d/c all meds. Pure agony!! Then added back Plaquenil and I am currently on Arava. Jury still out on the Arava. But I’m happy to report after starting the meds I have now gone from five foot surgeries in five years to NONE in the last five. Although my ankles do swell often and are warm to the touch.I also have tendon issues in my wrists and elbows which come and go. Trigger finger and claw toe as well. I’m seeing an ortho for my knee on the 13th.
What are your tendon issues?
Just struck me as funny that my life has become comparing tendon issues ! 😂
I have the tendon issues too, Emmie! I'm glad you had people on your healthcare team that really knew their stuff and advocated for you. And I'm glad you found us 😀
-Victoria, Community ModeratorThanks so much for sharing, Emmie! That all sounds really intense, I'm so glad to read that you've not had to have any further surgeries in recent years!!
It sounds like yours became much more advanced and inflamed than mine - I had chronic achilles tendinitis every day for about 3 or 4 years, to the point that it was difficult to walk, and then one day it just disappeared (I feel that taking turmeric had something to do with this). But it's come back recently along with some plantar fasciitis. I also had an MRI a number of years ago which picked up on enthesitis in one of my knees. At the time no one seemed to click that the foot tendon issues could be related to PsA (they did mention that the enthesitis was though). I wasn't aware of how serious this could get so I really appreciate you taking the time to share!
First, thanks for joining and we're happy to have you!!! We actually try very, very, very hard to keep this a safe, positive, and constructive place for members. We have amazing moderators (like Catherine), too. And, we try to keep in mind that the written word online tends to read "negatively," so we always try to give members the benefit of the doubt as well!
SO while I don't have PsA, I did have trigger finger and DeQuervain's Disease (tendon issues in the wrist and thumb) - man that HURTS! But I can't begin to imagine what you're going through right now -- and sending positive vibes your way that the Arva works some magic. Any idea how long you have to be on it before seeing results?
Thank you, Rebecca. I’ve been on it about seven weeks. They say 6-8 and I started feeling better at 6. I’m hoping for continued improvement. I’m only on 10mg so he may increase it at my next appt which is on the 13th.
The most positive result I’ve experienced is less fatigue. The joint pain still a little more than I had hoped. But I’m optimistic! I’m curious to hear if he is leaning toward PsA vs RA as this will be my first visit following the joint fluid analysis.My joint fluid WBC was 13,700. He didn’t culture it so he may want to do it again with culture to see if we can get a clearer diagnosis.
Thanks again!
